Saturday, January 9, 2010

When The Receptionist Knows Your Name

January 7, 2010, end of Cycle 24:

You know you're battling cancer when the receptionist at the Mayo Clinic Hematology desk knows your name as you walk in. Happened Thursday.

24 cycles of the pomalidomide (CC-4047, Actimid) study are complete, and it's been a great ride. Not over yet, but Thursday was a hint that it might be over before long. Or was it a hint? The worst news, really, was that M-spike went from 0.9 to 1.0 g/dL. I stopped dexamethasone (DEX) completely for this cycle, the first cycle without it, and M-spike inched up. Maybe. Although M-spike tracks the tumor burden most closely, it is not especially accurate, and IgG only went up a little, from 1090 to 1100 mg/dL, so maybe it didn't really change. IgG is a measure of ALL immunoglobulins, including the monoclonal ones that make up M-spike, so if M-spike goes up by 0.1 g/dL, then IgG has to go up by 100 mg/dL, all else being equal. So I don't know whether to cry in my beer or not. I guess I'll just drink it.

I did try to stave off an increase, with curcumin 8 grams per day and quercetin 4 grams per day during this cycle. Did they help? No way to know, but if they did, they didn't help enough to send M-spike southward. I've also taken ashwagandha for three cycles now, one capsule per day, and I think I'll probably stop that because it made no noticeable improvement for any of the three cycles. I'll keep taking the curcumin and quercetin for another cycle, on the theory that M-spike might have been worse without them.

The other bad news is that my neutrophil count has dropped to 1.38 K/uL, its lowest level ever and well below the bottom of the reference range, which is 1.70 K/uL. Further, my white cell count (which includes neutrophils) confirms this, dropping by just about the same amount. This is one of several possible pomalidomide side effects. I had thought I was immune to this problem, but now that I look closely, both of these numbers have edged downward during the 24 cycles. They bounce around a lot, because neutrophils and other white cells respond to microbial threats in the body, but the trend line tilts slightly downward, as indicated by the blue dots in this chart.

It's possible that those white counts are down partly because my body just hasn't encountered any threats lately. Somehow, I successfully navigated all of the Christmas and New Year's parties, plus a grandson visit, without catching anything. Whatever the reason, however, without sufficient neutrophils a person could develop a life-threatening neutropenic fever, so the pomalidomide study requires a neutrophil count of at least 1.00 K/uL. To keep the count high enough the regimen can be changed, from pomalidomide every day to three weeks on and one week off. If that isn't enough, there may be another way to reduce the dosage, perhaps taking the 2-mg capsules every other day, though we didn't discuss that. Getting ahead of myself here.

Running seems to be going a bit better without the DEX. Dr KDS says that it may take a couple of months for the DEX effects to wear off entirely. I do notice that a small open skin scrape on one ankle has healed over since stopping the DEX, and other little skin injuries heal faster too. I imagine that the microscopic muscle, tendon, and bone injuries that a runner gets all of the time will also heal more quickly. If so, they won't develop into painful injuries that would require me to stop or slow the training. We'll see. Several more marathons ahead this year, if all goes well.

Some current test results:

Oct 15
Nov 12
Dec 10
Jan 07
M-spike g/dL
Best tumor measure
IgG mg/dL
Variation is normal
L FLC mg/dL
L Free light chains
Calcium mg/dL
Below 10.2 is best
Creat mg/dL
Kidney, normal
HGB g/dL
Hemoglobin, normal
Red cell count, low
White cells, low
Neutrophils, low

Related links:

My Myeloma
A discussion of my myeloma, not very technical.
My Treatment History
Not technical.
My Test Charts
Graphic displays of several key test results over time.
My Test Result Table
Best with a wide browser window. Very "technical."

Sunshine made this. I ate it for dinner. Yum.


  1. The receptionists have long known my name at my local cancer center! Haven't gotten to that point at Mayo, though. :)

  2. Don't waste a good beer! I have been on blood thinners for a few years now, and I plan enjoying a cold one once the MM is gone post transplant(s) and when the doc gives me the green light to slowly step away from the coumadin.

    Thanks again for posting your numbers!

  3. Hi Don, your numbers look super to me! Too bad about the neutrophils and low white cell count, but those may bounce back with your next tests. Fingers crossed!
    Florence, Italy

  4. Don, I glad you are going to keep taking the Curcumin. Steve has been off all chemo drugs since June 15th but has been faithful in taking his curcumin. His numbers do go up slightly every time he is checked but not high enough to be put back on anthing yet. They still call him smoldering for now.

  5. Hi Don,

    this is my first post to you
    even if I have been following and appreciating very much your blog for a few years.
    I am from Italy (so I beg your pardon for my English).
    I have seen in your "My tratment history" that you seeem to have started with Thalidomide without dex. I am very interested into this
    because it seems I have to start soon treatments for MM, but due to glaucoma that I also have (!) I am very afraid about dex (or any other steroids): as you maybe know
    steroids makes ocular hypertentsion
    (and hence glaucoma) higher. So I am wondering if you really began treatments with Thal without dex,
    or if you have heard something similar.
    Really many thanks.

  6. Hello Francesco,

    Welcome. Good to hear from you.

    My treatment with thalidomide was suggested by my first hematologist, who was not very experienced in myeloma at that time. I was not yet in Stage I, only smoldering, but he wanted to try a modest treatment (50 mg thal daily) to control the myeloma. He didn't suggest it DEX because he knew that it would affect my lifestyle.

    Thal didn't really work, and it gave me a bad rash. Maybe it would have worked better with DEX, which might also have controlled the rash! And as you know, everyone responds differently.

    Yes, people do take thalidomide and Revlimid without DEX. I am now taking pomalidomide (similar to thal and Rev) without DEX because I was on DEX for almost two years and there is a risk of long-term side effects from it. So far the pomalidomide seems to be working by itself.